Sunday, August 29, 2010

Faith, Fertility and Doogie Howser

I'm not sure if my husband and I ever could have imagined the lengths to which we would go in order to have a baby. But I am sure that it was shortly after our initial appointment with the fertility doctor that we knew our journey was going to be more complicated than we had originally planned. As I mentioned before (see “Our Journey” post), both my husband and I grew up devout Catholics. We had to rethink all we ever were told about morality and conception from our schooling, where things like IVF and embryo biopsies were not an option. My mother-in-law, who epitomizes the word “Catholic,” wasted no time thinking after she heard about our issues and their possible solutions. After listening to our sordid tale, she came out with one of the most beautiful quotes, from one of the most unlikely sources--the popular hit television show of the late 80’s, early 90’s, Doogie Howser M.D. This quote, from Doogie’s computer journal that he faithfully typed at the end of every episode, read, “when the tools of science meets the mysteries of faith, the most powerful of all human miracles is born. It’s called hope.”

I have never felt like what my husband and I were doing to try to conceive was ever wrong. How could anything that brings about a life, a little soul, be wrong? I begin to wonder if the people in the various religious institutions who made the rules about what is the “right” way to conceive ever had trouble conceiving? Have they ever felt the despair, the loss or the sense of hopelessness a couple with infertility faces? Have they ever seen the joy of a family who has conceived a child through IVF after trying for many years? For a person like myself with a severe translocation coupled with endometriosis, “conceiving naturally” is not an option and would just lead to one miscarriage after another.

My daughter, was conceived because “the tools of science” met with “the mysteries of faith.” My fertility doctor actually looked at my daughter the other day as we went over my discouraging medical history and said, “She is a miracle.” I didn’t want to hear that from him as we were talking about trying to conceive again, but I appreciated the statement regardless. My daughter, at the tender age of two, enters a room and fills it with love. She emanates joy. Her friendliness is contagious, even to random strangers in the grocery store to whom she introduces herself unsolicited. My daughter is compassionate and thoughtful, a truly special soul. If my husband and I followed the rules mandated by certain religious institutions, my daughter wouldn’t be here. But we didn’t, and she is. She is a child of God, and she is full of Grace (which also happens to be her middle name).

My faith in God gives me grace and strength to get through this difficult journey. My fertility doctor and all of the medical procedures that exist out there to help me achieve a pregnancy give me hope. My husband, my daughter, our parents and other supportive family and friends give me love. Because of this combination of support, I am well armed to fight infertility. Without faith, hope and love, I would be lost.

There is a great anecdote that sums up how I feel about taking advantage of all there exists medically to help me conceive. I heard it during a homily at mass one day, and it went something like this:

A great flood came to a town, and the waters were rising steadily. A man was determined to stay in his house, convinced that God would save him. A neighbor came by with a row boat and asked the man if he wanted a ride to safety. The man said, “No thanks. God will save me.” The waters continued to rise, and the man went up to the second floor of his house to escape the river. Then, a police boat came by and ordered the man on the boat. The man replied, “I will not go, God will save me.” Finally the man had to go on top of his roof to avoid the rushing waters. A helicopter came by with a rescue basket warning the man this was his last chance to evacuate. The man again refused saying, “It’s okay. God will save me.” Later, the man got swept away with the rising current. At the pearly gates the man asked his Creator, “Why didn’t you save me?” God replied, “I sent two boats and a helicopter. What more could I do?”

Because I am only human, I have no idea what will be said to me regarding the use of fertility treatments when I arrive at the pearly gates to meet my Maker. I just might hear the words, “Bad call.” My heart and soul are telling me otherwise, though-- especially when I look at my daughter and see God so clearly in her. What I would not want to hear is, “I sent a reproductive endocrinologist, a genetic lab and an embryologist your way. What more could I do?”

Friday, August 20, 2010

M is for Miscarriage

I have always known that there was intense suffering and pain in this world. Throughout high school and college, a good part of my time was spent volunteering, which gave me the opportunity to sit and talk to people during their most difficult times. I have done outreach with the homeless population in New York City, assisted women who were dying in Calcutta, played with orphans in Tijuana and even counseled men with addictions who had been incarcerated on the Lower East Side of Manhattan. My whole life I have felt a real responsibility to hear people’s stories as they navigate the most arduous terrains of their personal journeys. I always felt that listening to their stories made them feel less alone, and that it was the least I could do. Now, reflecting on some of the most painful parts of my own journey, I hope to reach out to people going through similar situations so that they feel less alone.

Growing up, I remember hearing how my mom had five miscarriages between me and my brother, who is 8 years younger than me. My mom never really talked about it. My parents both felt that my brother and I were miracles and they were so grateful for us. Yet, “miscarriage” was a word that always brought me fear and anxiety. Although the issue my mom had with her uterus was not genetic, somehow I still worried that what she went through could be a possibility for me as well. It was a potential reality I didn’t want to face. In my early twenties I was certain I could never emotionally survive a miscarriage if one came my way. I was also sure I could somehow strategize my life to avoid miscarriages. If only we could find a way to strategize the pain and heartache out of our lives!

In the past two years I have had four miscarriages. Some have been worse than others, but it goes without saying that they all have been low points in my husband’s and my journey. Due to my diagnosis of a translocation (see “Our Journey” post), 94% of our pregnancies will end in miscarriage. Needless to say, something I was certain I could somehow avoid became a very real and steady presence for me, a great source of anxiety in my daily life. My diagnosis of the translocation was devastating, but after three consecutive miscarriages, I was glad to finally have some answers. Stress and uncertainty are a major part of the world of infertility treatments. Yet, hope is just as present. A miscarriage is the antithesis of hope.

To know you have a life growing inside of you that is no longer “viable” is devastating. In my case, to know you have a life inside of you that is struggling to survive, but most likely will not make it, is heart wrenching. Especially since nothing I can do can help, and I just have to wait for it all to end. By my fourth miscarriage, I felt like my body was just a hospice for what were once potential lives. Like in grieving for a lost loved one, I certainly grieved for each pregnancy lost. When my doctor called me and told me told me that all 12 IVF embryos weren't viable, I grieved for them too, even though they were never actually implanted.

Every time the doctor tells me that I am pregnant, or that we have embryos growing, I feel like it is a little piece of my husband and me now out there in the universe. I feel there exists a little life, with a lifetime of potential. Though I am always aware of the odds working against me, I feel like where there is life, there is hope. When there is no longer life or when I know life is no longer thriving, all hope is lost. And I myself feel just that-- lost. While I am waiting for the miscarriage to come, I mostly disengage with my surrounding world, except for participating in what is necessary. When it arrives, I take a few days to grieve and keep my feet up. I take time to feel sad. I cry. I drink chocolate milkshakes. I don’t talk to anyone for a while because there is nothing to say and nothing that can be said to make me feel better. Nothing. If I could make time freeze during these periods so I could let the suffering pass and then unfreeze time when I am ready to face the world, I would.

I am just one woman amongst many who have had similar experiences. My heart breaks when I read the blogs of other women who have gone through this, and in some cases, so much more. I am amazed by the grace and the strength of these women to keep going. I am amazed by the strength of my mother, now that I have a deeper understanding of what she went through. Quite frankly, I am amazed at my own strength. The 22 year old Casey would have predicted the present-day Casey to spontaneously combust at having to handle all of this. But I am still here. We somehow all are still here, no matter where our journeys have taken us. That wisdom first came to me long ago when I volunteered, witnessing all of the incredible survivors living through insurmountable crisis. I am grateful for the grace and the strength that have carried me through. And I pray that life’s most difficult paths will continue to grant me wisdom.

Saturday, August 14, 2010

"Where Everybody Knows Your Name"

I love my Reproductive Endocrinologist (better known as my fertility doctor.). I love him as well as every single member of his staff in a deep, would-throw-myself-in-front-of-a-bus-to-save-their-lives, committed sort of way. The funny thing is, I think they feel the same way about me. Well, maybe it isn’t realistic to think they feel that way about their patients. But they make me feel like they love me in that way, and that is good enough for me. When I walk into their office, I feel like Norm walking into Cheers. I get a big, friendly warm welcome. During an IVF cycle, when I am seeing them 3-4 times a week, the office becomes my second home and they are a surrogate family to me. And when I am on a break from treatments, I actually miss them.

After six months of trying to conceive naturally at the tender age of 26, my ObGyn recommended that I go see a specialist. This referral made me sick to my stomach. It confirmed and made real my underlying suspicions that there was indeed a problem. I didn’t want to go to a specialist. But, more accurately, I didn’t want to have a fertility issue. Rising above my anger, fear and frustration was my overwhelming desire to conceive and become a mom. I made the appointment with the specialist and anxiously awaited the big day.

I was truly hoping for some answers. None of the doctors in my gynecologist’s group understood infertility. They all had said things to me ranging from completely dismissive, to terribly ignorant and hurtful, to just plain outrageous. One doctor in the group told me that every women had painful periods and it wasn’t that uncommon (I was later diagnosed with endometriosis). Another doctor actually touched my arm, made a noise like he was electrocuting me, and assured me that he gave me his “special touch” and I would be pregnant in the next five months. His nurse looked at me and said, “MmmHmmm honey! I hope you are prepared to be pregnant. It always works!” The same doctor told me on a separate occasion just to get a bottle of wine and go on vacation, and that my husband and I would be pregnant in no time. He was confident that it would work for us because it had worked for him and his wife. (Thank you doc for the TMI-Too Much Information)

Anxiety, sadness and despair overwhelmed me and my husband the first time we sat in my fertility doctor’s office waiting for him to see us. It was really strange seeing all of the other women around me waiting for their turn to go in. It was the first time I had knowingly been around other women who were having fertility issues. I was so anxious that the doctor would not take my issues seriously and would write me off as too young, crazy or “just stressed.” I was also just as anxious that based on my symptoms he would tell me my case was hopeless and there was something seriously wrong with me.

As it turned out, the specialist did neither. My husband and I went in to meet with him and he listened to our journey and my symptoms. He asked many questions regarding my personal history. He recommended some initial testing and explained it in a clear and descriptive manner. He didn’t dismiss me. He listened with empathy. He didn’t overwhelm me with a lot of information, but gave me enough to feel empowered. He didn’t promise me that I would get pregnant, but he didn‘t find my situation hopeless either. He answered my long list of questions. I immediately felt comfortable with him. And his staff were all very friendly, and also answered all the questions that I had. I left the office that day feeling sad that my journey to conceive had resorted to seeing a specialist, but I also felt new hope in being in the right hands with this new doctor and his staff.

Over the past four years I have counted on my fertility doctor and his staff through my and my husband’s most difficult days. One particularly rough day included a visit to my ObGyn for a yeast infection I had developed after taking an antibiotic right after one of my IUI procedures. I knew there were at least ten days to go before my fertility doctor wanted me in for a pregnancy test following my IUI. I shared this information with my ObGyn, yet she kept going on and on about how she always got a yeast infection when she became pregnant with each of her four kids. She was sure I was pregnant too. I assured her that a test couldn’t show it now, even if it were true. She ordered one anyway, and as I was waiting for her to give me the results of my urine test, I heard her outside my examination room telling the nurse that the test was negative and that I could go. The doctor couldn’t even bear to look at me. I asked the nurse about the test, wanting to be sure I had heard correctly. The nurse responded, “Don’t worry, you can relax. It is negative.”

I tried to keep it together as I left the ObGyn’s office. I immediately called my fertility doctor’s office and through tears told the nurse my story. She assured me that it was too soon for even a blood test to show a pregnancy result. She said that she was sorry I had to go through what I just went through and told me to relax and come back in a week and a half for a blood test. The fertility doctor and his staff supported me when that blood test did eventually turn out to be negative. They always gave me the difficult news of negative pregnancy tests, or worse, of impending miscarriages, in a compassionate, professional manner. I could always tell they were rooting for me, and yet they never gave me false hope. They were so incredibly happy for me when the fertility doctor told me and my husband that the pregnancy with my daughter was viable, after many blood tests and ultrasounds. I feel like they truly are the only ones who understand all that my husband and I went through to conceive my daughter, and the odds my daughter overcame to be here. I count on the fertility doctor and their staff for their honesty, for their guidance, for their support. They are never dismissive, they never say the wrong thing. They define the word “sensitive” day after day.

I love my fertility doctor and his staff. I feel I can never repay them for what they have done for me these past four years. My fertility journey has been quite traumatic, terrible and even terrifying at times. They are a shining light for me, and I know I will continue to count on them to get me through the long journey that lies ahead of me. When my daughter and I say our prayers at night, we make sure to say a special prayer for them. For them we are so grateful.

Sunday, August 8, 2010

Why I dislike "To Become Pregnant" Magazine

So it has been a long while since I had been to my fertility doctor’s office. After the IVF failed in August due to a lack of viable embryos (see “Our Journey” blog post) my husband and I decided to take a break from fertility. The very next month I needed surgery to remove my gallbladder, a result of the type of birth control pill I was on coupled with all of the “pregnancies” I had. Then in November I surprisingly and unintentionally got pregnant naturally and went in to see my fertility doctor only to miscarry on Thanksgiving Day. After taking a real break for almost a year, my husband and I decided it was time to test our luck once more with trying to conceive through IVF.

While waiting to see the fertility doctor on my first day back to the office, I spotted a familiar nemesis in the waiting room. Let’s call my nemesis, “To Become Pregnant” magazine. Goodness, I really dislike this magazine. I have to see it not only at my fertility doctor’s office, but always at my regular ObGyn’s office as well. The magazine just sits there on top of some sort of unnecessary office furniture, mocking me, with an unnaturally adorable baby on the cover, followed by many more adorable baby pics and pregnant bellies on every other page. I have since come to peace with this magazine. But back before I knew everything that I had going against me fertility-wise, this magazine would haunt me, as it may haunt many of you. Every magazine always details an overwhelming, unreasonable amount of tasks to complete in order to have a better chance at conceiving. And it always STRESSED ME OUT. I decided to go through this magazine and put together all the things I would have to do to increase my odds “To Become Pregnant,” that is, according to their advice and the advice of their advertisements.

First, I wake up and take pills that some woman testified gave her a “miracle baby”. I cook all of my meals according to the recipes found in a “how-to-cook-for-infertility” book. I make sure I see the dentist in order to avoid gum disease, which could not only prevent conception but cause stillborns. I check all carpets, electronics and household items that are fabric, foam or plastic because they may have a chemical that is effecting my ability to get pregnant. Since I can’t take 5 months off from work to complete a fertility spa program to increase fertility, I get that same program’s recommended exercise DVD and routinely work out my “core”. On top of that, there is a Yoga Ball I use to help and some regular yoga positions with more accompanying DVDs. I eat a lot of Greek Salad or anything that can be considered to be a Mediterranean diet. But of course I cannot diet in general because that will thwart any initiatives I take towards conception. I eat healthy, though, and there are many healthy snacks I choose from. But I also eat chocolates which have been prayed over that could help with my fertility. Finally, others are doing acupuncture, herbs and massage, so I do that as well.

Not only are there tips for me in this magazine, but many tips for my husband and I to follow together. There is a lubricant we have to use that was developed by a Sperm Physiologist(???). One woman swore the lubricant helped her achieve her “miracle baby”. We chart cycles, use a fertility monitor, track cervical mucus, and I simply listen to my body. We “don’t start messing around with alcohol, hormones or drugs” when we are getting ready for pregnancy (!!!!!). Around the time we are trying to conceive we eat foods that are sexy (on top of snacking on non-diet, Mediterranean recipes from the “how-to-cook-for-infertility” book, with a side helping of prayer chocolates ). We exercise around this time, but not too much. I also buy new lingerie. Before doing an IVF, we ask the embryologist to rock the embryo before implanting it because it worked with mice. Oh, and we also relax.

Okay so why does this magazine irritate me so? Simply because it reminds me of that vulnerable, unsure, uninformed desperate young woman I was many years ago. I would read these articles and try to do everything they said to get pregnant. I would mostly follow every word, but would slip up here or there. If I didn’t get pregnant at the end of the month I would ask myself, ”Did I not have enough prayer chocolates?” or “Maybe it was those few glasses of wine?” or “Maybe the foods we were eating simply weren’t sexy enough?” Month after month of getting my period, I would second guess myself and try to figure out what more I could have done to get pregnant, or what rule I didn’t follow. With every issue of “To Become Pregnant,” there were more and more guidelines I had to worry about.

My fertility journey has taught me a very hard but vital lesson. We can twist ourselves into pretzels, change our whole lifestyle, inject ourselves with many, many hormones, but when it all comes down to it, we are still trying to bring a life into this world. There is a great mystery to all of this and it is frustrating as all hell. It makes me feel like I am repeatedly banging my head against the wall. But I would rather be frustrated and baffled than blame myself month after month for not being pregnant because I didn’t chart my cervical mucus right (gross!). I guess what I am trying to say is that I am clearly an advocate for being proactive, considering all the lengths I have taken to get pregnant, but I feel like we can’t blame ourselves for our inability to conceive. We have to be at peace with all of our efforts or non-efforts and accept (albeit begrudgingly) the mystery of conception. “To Become Pregnant” and magazines like these have an incredible opportunity to touch the lives of women who are on this difficult fertility journey, but instead they just make us crazy(er). They prey upon their vulnerable readers, all the while selling ad space to ridiculous companies. But I guess, “What you can do to try to improve fertility slightly although it may not even matter in the end” doesn’t really sell. But I must admit those prayer chocolates sure do sound good.

Sunday, August 1, 2010

My Favorite Note of Comfort

So, it is much easier to give advice on what NOT to say to people who are struggling to conceive (see previous blog, “What Not To Say” ). The truth is, there isn’t really a lot you can say to someone who is struggling with this difficult journey. Like with many hard things in life, there are no words to capture the sorrow, the pain, the loss and the heartache that this path brings. At any given moment, a caring supporter’s words can seem trite or meaningless, even with the best intentions. I have had many words of comfort said to me over the years and there is one grouping of words that stands out above the rest. I received the following note back in 2007 from a close family member. I saved it and have continued to read it during the more difficult times in my husband’s and my journey. I share it now because it continues to bring me comfort and strength.

The body of the note read:
I just wanted to email you and let you know that I am thinking about you. You don’t have to email me back. I know that when I am frustrated, angry, upset I don’t want to be asked a thousand times how I am. I wish there was something I could say to make you feel better or at least make you smile, but I know there isn’t. I just want you to know that I think you're so amazingly strong, a wonderful person and a wonderful woman and wife. I know that you must be confused, hurt, angry, etc but I just hope you are not internalizing it. It is so easy to blame oneself or think you're somehow a bad woman because you are having trouble doing what seems so natural. You are so wonderful and I have no doubt that you will be an excellent mother. Make sure you lean on your husband, your greatest strength is that you have each other.

Why is this note so great?
-I like the phrase “I am thinking about you.” It is nice to be thought of, yet the phrase is casual enough that you don’t feel like someone is obsessing or stressing over your situation.

-When I am in the thick of fertility treatment hell, I love emails and texts. I like not having to talk to people if I do not want to, yet I like knowing they are there if I need them. I liked that she said I didn’t have to write back.

-I like that she admitted she couldn’t make it better. So many people want to make it better, make you smile so they feel like they helped you (they make it about them and their need to help). They try so hard to be positive and hopeful. When you try to explain the reality of the situation and how you have to prepare yourself for a good or bad outcome, they try even harder to make it all better. Admitting that she couldn’t in fact help me actually helped me (Does that make any sense?!). She acknowledged my pain, anguish and uncertainty and was willing to be in that place with me instead of dragging me out kicking and screaming.

-She didn’t say I was strong enough to do this. She didn’t say how I was too wonderful to be going through this. She simply said I was strong and wonderful. When you are tired, when you are a temporary human pin cushion (from all of the injections), wondering if this will even matter in the end, hearing that you are amazingly strong and wonderful feels good.

-Throughout this process when I get in more self-pitying moods, I have often said to my loving husband through tears, “I feel like I am broken.” I have also said, “I am so sorry my body sucks and now we have to deal with all of this;” and if it is a particularly rough night, “You should trade me in for a younger gal with genetically sound, endometriosis free reproductive parts.” Inevitably he always reassures me that he loves me, he under no circumstance will trade me in and most importantly he reminds me that this is OUR journey together. The above note recognizes and allows for these insecurities in a non-intrusive way, all the while encouraging me to let them go.

-I like how she says I will be an excellent mother. She doesn’t say that I will be pregnant soon or one day in the future. She doesn’t say that I could always adopt if this doesn’t work. She doesn’t say when or how it will all work out. Her assurance and faith come through without making unrealistic predictions about my situation that inevitably will make me angry if they don’t work out. Also when the universe seems like it is campaigning against your desired role as mother, it is nice to get a vote of confidence.

-Finally, after acknowledging my sadness, frustration and stress, the note ends with an affirmation of my greatest strength. Again, this note is great in large part because of what she could have said but had the wisdom not to. She didn’t say, well at least you and your husband will always have each other. She instead reminded me that I am not in this alone, and even if the world around us crumbles, my husband and I can pick up the pieces if we rely on each other.

This note really was a comfort to me. The unfortunate truth is, it may not serve as a comfort to other women going through a similar situation. I cannot speak for everyone. We are all individuals on this path, and what is good for some may not work for others. Also, depending on where we are in the journey, our needs change from day to day. All of us share common desires, though. We want to feel loved and thought of. We need people to listen and to talk to us, but only on our own terms. We want to be included in everyday activities, but also want our space when needed. Some days we will need laughs and distractions with no mention of fertility, and other days we need chocolate ice cream and tear fests. So for all of those with friends or family members who are going through this, ask us what we need through email or text, tell us you are thinking about us, and we will certainly come calling when we are ready.

(I look forward to comments about what words have brought you comfort)